As some of you know, and many of you do not, I was diagnosed with Lyme Disease in August of 2015 after a year long struggle with pervasive and consistent health issues, most of which were dismissed by the numerous doctors I saw during that time. These health issues included, though were certainly not limited to: insurmountable exhaustion and fatigue, spontaneous headaches, night sweats, vision problems (blurred vision and intense eye floaters), vertigo and dizziness, loss of feeling/neuropathy in my hands and arms, sore throat, swollen glands and body aches, a rash covering large portions of my body, severe abdominal bloating and pain, unexplained weight gain, urinary complications and kidney stones, panic attacks, body soreness and muscle aches and frequent sinus and upper-respiratory infections.
Each of the doctors I went to ran the standard blood tests, cleared me of any major health issue and blamed my symptoms on "stress." At first, I believed them. I had just moved across the country and started a challenging job. I surely was stressed. But after a few months, while lying exhausted in my bed on yet another beautiful California afternoon, I reflected on how much I loved my life. I was living somewhere I had always wanted to live. I loved my home and my husband, I was almost done with a stressful school year and still, my symptoms raged on endlessly. This was not stress. This was my body failing me and I needed to do something about it.
I am not a complacent person. I never have been. I do not easily accept defeat and my health was no exception. I was determined to do whatever it took to get well again. One of the first things I did was cut out all processed food from my diet. I eliminated sugar, gluten, dairy, caffeine and alcohol and ate almost solely organic. I went to acupuncture and took meditation courses. I sought alternative health practitioners, had colonic therapy and infrared sauna sessions. I underwent an endoscopy and colonoscopy. I went to the emergency room four times total last year for a severe chest cold, loss of feeling in my limbs, a kidney stone and excruciating abdominal pain. I saw a chiropractor, Chinese and Functional medicine doctors and spent more money than I care to think about trying to determine what could possibly cause me so much stress that my body was shutting down. It seemed that every disposal dollar that came into our home went into my health crisis. I underwent genetic testing and a heavy metal toxicity screen. I cleared my home of toxic chemicals and cleaning supplies and took handfuls of immune-building supplements daily. All the while, I tried to maintain my old active and outdoor lifestyle, but running even a single mile was a herculean effort.
It was two steps forward, three steps back for a long time. When (yet another) doctor I saw suggested Lyme disease, I assured her I had already been tested for it. Surely the doctors must have tested me months ago, right? I was visiting them three to four times a month. In fact, I was so sure I didn't have it that when a dear friend of mine suggested that she suspected Lyme Disease, I told her it was impossible. The blood work must be there. But when I went back and looked, I realized that I had never, in fact, been tested. And now that it had been so long, I would have to undergo a new, more sensitive test and I would have to pay out of pocket for it since the doctor ordering the test did not take my insurance.
The month I waited for the result of this test happened to be July and my summer vacation. I devoted every waking hour to regaining my health and state of mind. I spent weeks at a yoga ashram in Grass Valley, meditating and doing gentle yoga daily, eating an all organic, vegan, gluten-free diet of almost all fresh fruits and vegetables. When I was tired, I rested. When my body ached and screamed, I practiced mindful breathing and acceptance. When I got frustrated about weight gain despite eating the cleanest diet I'd ever been on, I practiced self-acceptance and compassion. I found quickly that during the moments when I was pain free, I was happier than I'd ever been in my life. All of my introspection and soul searching had, indeed, brought me true gratitude and happiness. When the pain returned, however, I reverted back to a whiny child, literally calling my mother to wail about the unfairness of it all. But during those moments when the pain lifted, I was freer than I'd ever felt before. I was unburdened by what my body had been going through and felt like I could propel myself with joy.
The results finally arrived in late August of 2015. I had Lyme Disease. I brought the results to the original doctor I saw so many months earlier and she immediately referred me to an infectious disease doctor, saying very little about why I had never been tested in the first place. I had already done extensive research on doctors in the area and found a specialist in San Francisco who did not take my insurance, but had the reputation of being the best in the area. I had my first appointment with him the last week of August, one week before I was scheduled to start my new teaching job.
I have been treated for Lyme disease for four months now and I can honestly say that I'm slowly getting better. While I still have terrible, room-spinning, "I can't go on like this" days, I also have entire weeks where I can participate in life like I used to. Instead of two steps forward, three steps back, it's starting to feel like three steps forward, two steps back. Like a tortoise, I'm crawling closer to health.
I take a lot of medication: six strong antibiotics a day, prescription strength probiotics to protect my stomach, anti-fungals, anti-virals (as my immune system struggles, I also tested positive for epstein barr which explains the constant sore throat and exhaustion - apparently a lowered immune system means old viruses rear their head) an absolutely offensive amount of herbal supplements and a rotating cast of other medications. I am on strict instruction to not get pregnant at this time because my body could not handle the stress, my medications and the disease itself potentially harmful to an unborn fetus.
As someone who does not consider myself a "medicine" person, taking this medication continues to be a tough pill to swallow (English teacher loves puns). I've narrowed down my medical providers to two: the specialist in San Francisco and Dr. Su, a Chinese Medicine doctor to whom I attribute my survival last year. When I show her my list of medications, she sighs deeply but works with me to offer milder, herbal supports to help reduce some of the toxic effects of all the drugs I take. Understandably, she believes in a slower and steadier herbal approach to the disease, and part of me does, too. But for now, I am putting my eggs into the basket of western medicine and hoping for the best.
The doctor suspects I contracted Lyme years ago while living in Astoria, Queens. After a hike in the Catskill mountains, I came home and, indeed, saw a deer tick on the back of my leg. I dug it out on my own with a pair of tweezers and hadn't thought of it since. I was under the common impression that I would get a bullseye rash if there was any of the tick left and if I was in danger of infection. Unfortunately, I did not know at the time that fewer than 50% of people bitten by a deer tick actually get the rash.
The doctor surmises that for a number of years, my immune system was strong enough to battle the infection on its own. While I remember getting sick quite easily during those years and feeling like I had a pretty weak physical disposition regarding illness, I was completely functional. Instead, it just seemed like I was a bit of a hypochondriac, complaining frequently of a cold, headaches, tingling hands and feet or other symptoms that came and went. I can see now that my immune system was already compromised but doing an acceptable job of keeping the Lyme disease under control.
About three months before moving to California, I took a trip with my husband, Steve, to Nicaragua. At the "advice" of the CDC, we each got three recommended travel vaccines before going away. Within three months of these vaccines, my immune system began showing symptoms of Lyme Disease and dysfunction. Now, I am in no way an anti-vaxxer and I believe that vaccines are beneficial to individuals and society. But because I did not know about my compromised state, it seems that these vaccines which could be easily processed by a health body, weakened my system enough to let the Lyme Disease finally express itself. And boy, did it. With a vengeance. It was the proverbial straw on the camel's back and I became extremely ill soon after.
I write all of this now, and put my personal business out there, to warn those I love of the life-altering impact of this terrible disease. When I scroll through Facebook, I feel such overwhelming joy seeing the people I care about living their best lives. But each time I see a picture of a loved one hiking in shorts or playing in the grass, I am compelled to reach out to all of you. I had heard about "tick checks" and "tick bites" during my entire childhood. It seemed to me like one more reason for my mother to nag me after being outside playing all day. I never, and I mean never, took the risk seriously. As a nature lover and outdoor enthusiast, I did stupid things. I hiked with short socks and forgot to check my body for ticks after a full day in the wilderness. I would go off-trail to explore deep woods more, not knowing that ticks run rampant in the brush and off-trail. I did not follow up with a doctor after seeing the tick bite I did get, instead sending it to the back of my mind where it remained until this past year. I know that I am not to blame for my illness, but my carelessness played a role. I took my strong, athletic and powerful body for granted and I continue to pay the price for this each day.
I wish that, as I write this, I were past this struggle. I wish I could say it is all part of my past, but the truth is that I continue to deal with it every day. And while I am overjoyed to see improvements in my health, I know that dealing with the effects and after-effects of this illness separate me a bit from others in my peer group. I continue to pay large amounts of money for medication, treatment and fresh organic food. I need to think carefully about everything I put in my body. I need hours of restorative sleep because missing even one night can set me back weeks. I need to protect my immune system like the precious gift it is and I can never take a day of healthy living for granted. I need to rejoice in my good days and tolerate the bad ones with as much grace as I can. I am learning when to push and when to pull back, which is a huge challenge for someone for whom the answer was always to push harder in all areas of life. I need to learn to love myself in this new body and not to resent this experience, but to embrace it as part of my new reality.
Lyme Disease cannot be seen, but it can be heard. What a person with Lyme Disease needs is for her loved ones to hear, to understand and most importantly, to believe her. To be patient as she lists her many symptoms because as frustrating as it may be for you to listen to them, it is exponentially more frustrating to be the one experiencing them. One of the hardest things about the disease is its invisibility. To explain to a friend that you can't keep your plans because it feels like your brain is screaming, or that you can't be there for them because you're "too tired" is not always well-received. On the outside, I look a lot like the same Elisa. But a new version of myself resides beneath the surface. I'm learning to love her, but it is a slow process.
A note on support: Whenever I'm feeling sorry for myself, or feeling like a victim, or wondering what I did karmically to deserve this challenge, all I have to do is look to the people around me to snap out of it. Yes, it's possible I did something wrong in a past life to deserve this struggle, but I must have done something remarkably right to deserve the man I get to spend my life with. Throughout this journey, Steve has shown me nothing but patience, acceptance and true unconditional love. He has supported every decision I made on my road to recovery. He has handed over his hard-earned money to help me find healing. He has accompanied me to innumerable doctor's visits, sacrificed objects and experiences he wanted for himself time and time again. He never asks for a thank you. He never demands credit or praise for giving so much to his wife. He is the epitome of a true and honorable man and I am forever grateful to share this life with him. Our parents and stepparents have supported us emotionally and have helped to ease the financial burden of the disease. I have found a best friend in my stepfather, Ira, who thinks of me with such love and care that I swear I can feel it all the way in California from the east coast. My newest friend and soul sister, Diana, has taught me the meaning of compassion. She is kind to me on the days when I can't be kind to myself and is unwavering in her patience and support. Many friends, old and new, have shown me such overwhelming love during this time that I am forever indebted to them.
I hesitated putting this out to the world because, like many others, I fear judgement. But if one person can use my story as a lesson to avoid making the same mistakes I did, then I can withstand the judgement of those who think dirty laundry is best left un-aired. We all face struggle. On social media, we tend to put our best foot forward and show our bright smiles to the world instead of our tears and despair. We veil our weaknesses and change the memories of the past with filtered photographs of ourselves at our finest. Sometimes, our finest hour is the one when we expose ourselves for who we truly are. Beautifully flawed, undeniably vulnerable and gloriously human.
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